Endometriosis is a disease affecting 1 in 10 women worldwide. It can cause physical pain, mental health issues, negative socio-economic impacts, and infertility. The diagnosis is often delayed due to complexity of the disease and society’s normalization of painful periods. To help the women who are affected by the disease, more awareness and research are needed around the world.
Endometriosis affects approximately 10 % of women of reproductive age. It is a complex disease in which tissue similar to the lining of the uterus grows outside the uterus, causing inflammation.
Currently, there is no cure for the disease. Symptoms are controlled with medications, hormone treatments, and surgeries.
According to WHO, multiple factors contribute to the development of endometriosis.
Dr. Ernesto Álvarez Durnov, a specialist in gynaecology and obstetrics in Panama, has worked with endometriosis for almost 20 years. He believes genetics and lifestyle play a big role: “We know it has a strong hereditary link. Processed foods, sedentarism and stress cause it to grow faster and more aggressive”.
Other potential factors include altered or impaired immunity, localized complex hormonal influences and environmental contaminants.
Complexity of the disease
Each woman is an individual, so the symptoms may vary a lot. Endometriosis can cause pain during ovulation, menstruation, intercourse, bowel movements, and urination. Women have described the pain as if ‘somebody is stabbing you’ or ‘your uterus is wrapped with barbed wire’.
Panamanian Milagros Mitchell, 30, has been affected by endometriosis since puberty. After ten years of unexplained suffering, she was diagnosed with the most severe (stage 4) endometriosis.
To properly diagnose the disease, surgery method called laparoscopy is needed. In Mitchell’s case, the tissue was seen to have spread to her ovaries, uterus, bowel and bladder.
“I don’t have a big belly, but at some point, the inflammation was so strong that I looked like a pregnant woman. I felt desperate. There was no medicine that could control my pain”, she explains.
Before the surgery that finally helped reduce her pain, Mitchell was first given a hormonal treatment for her symptoms that brought her into an early menopause: “It was awful. I had menopause symptoms at the age of 30. I wasn’t having my periods, but I still had all the symptoms of endometriosis”, she says.
Acute need for awareness
Endometriosis is not often detected due to taboos, stigmas and assumptions. Many people assume painful menstruation is normal, which often leads to delayed diagnosis.
However, life-altering or distressing pain in the pelvic area is not normal.
Mitchell was one of the many who had never heard of this common disease, but many health care providers are not educated on it either.
In spite of several doctor visits, Mitchell was never given proper answers to her complicated menstruation with heavy bleeding and severe pain: “Many doctors thought I had some problems with my bowel, but it took over ten years to diagnose endometriosis”.
Álvarez Durnov believes many countries have not invested enough to treat ‘non-fatal’ diseases like endometriosis. He also thinks there is an issue with assumptions: “Many mothers tell their teenage daughters in pain that it is ‘normal’. Many doctors tell the same thing to patients”.
If endometriosis is left untreated, the disease can affect various organs. Complications can then become life-threatening. “Lung and intestine perforations can put the patient’s life in danger. It also is associated with certain ovarian types of cancer”, Álvarez Durnov explains.
High cost of the disease
Women and girls with endometriosis may miss work and school. It is also impossible to give best performance if the symptoms are too severe.
In Mitchell’s case, she is convinced she lost her job for having to use too many sick days. The company started questioning her eventually. “They looked at the numbers. I couldn’t tell them the truth because at the time I didn’t know what was wrong with me. So, the company didn’t know this, and I understand”, she says.
Mitchell does believe better worker protection is needed to help women with endometriosis that are not in control of their situation.
“I often worked on my period. Even when I was feeling my worst, I always tried to give my best. I was never recognized for that. Please, companies, take better care of your workers. Workers are not just a number”, she points out.
Treating a chronic disease gets expensive for constant need for medication. At one point, Mitchell was very sick, but she had then lost her job. In her case, she had to have her expensive, but life-saving surgery done at a private clinic. “I then had to ask my parents for money”, she explains.
Mental health at risk
The symptoms can make the woman subject to fatigue, depression, and anxiety. Mitchell has also had her moments of desperation: “Before I had the surgery, I said if God wants me to be sent to him, I am OK with that. There have been moments I have not wanted to be alive”.
Mental health also gets affected by the surroundings. Some people question the pain women with endometriosis are experiencing because of their own preconceived assumptions. “It is so traumatizing to hear from people that you are imaging it, being dramatic, and that periods are not that painful”, Mitchell explains.
Women with endometriosis are also at higher risk for infertility. Some women with no symptoms might only get a diagnosis after years of trying to conceive a child. Social impacts further challenge many women around the world mentally.
“When I got married, people would start asking about babies, but they don’t understand. I would love to be a mother, and this brings me into tears. I know I will have issues to have a baby, but what matters the most is my health”, Mitchell explains.
Multidisciplinary treatment with successful surgery and improved life habits have now improved Mitchell’s quality of life. She is grateful for her family: “My husband’s support has meant so much and given me peace. Without my family, I wouldn’t be here”.
Read more about endometriosis on this website.